Fit for a queen

A mom who writes at Maggie World shared this pic of daughter Maggie, 19 (top right), in her prom dress designed by Anne Marie, 16 (top left). "It's very difficult for Maggie to wear dresses because the straps from her wheelchair come right up between her legs. Further, her trache tube needs some sort of covering. This daughter of my friend loves to design clothes and designed and created a dress...

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Med students put themselves in the picture

Last week I met with an academic who uses comics to build empathy in medical students. Her name is Shelley Wall and she's illustrator in residence in the medical school at the University of Toronto. She drew the picture above to better understand her husband's experience of having early-onset Parkinson's disease. It shows the way he adapts his clothes to deal with problems with balance, movement and pain....

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How Teddy 'opened' his family

Softening is an exquisite film by Kelly O'Brien, documenting life with her son Teddy, now 6, who was born with brain damage and a grim prognosis. It's a candid story about a mother's love and loss, a sister's magical bond, a father's joy and dedication and a little boy's experience of the world, moment by moment. It premiered at Toronto's Hot Docs film festival in April. Teddy and sister Emma appear above. Here Megan Jones...

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When brain differences aren't deficits

Neurodiversity suggests that there are benefits to brains that think differently. In this recent piece in WIRED, Steve Silberman looks at the strengths and skills that result from the unique brain wiring of people with autism, ADHD and dyslexia. "One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn't mean that it's broken," Silberman writes. "Not all the features...

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Making sense of autism risks

After my son was born with a random genetic change that my husband and I don't carry, I was told by geneticists that if I was to get pregnant again, the chance of having a second child with this condition was less than 1 per cent. The genetics counsellor described those odds this way: "You have EVERY chance of having a perfect baby next time!" I was given the green light for more kids. So I was surprised to read a story about...

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Snap

Today we were having our regular Saturday lunch at a cafe near our home that makes great fresh food. We'd just started eating when I heard one of my daughters say: "Stop looking at him!" "Why are you looking at him?"  "What's your problem?" It was noisy in the restaurant, so I didn't know if anyone else could hear her. The person she was speaking to was sitting behind me. "Is someone looking at Ben?" I asked. "Yes,"...

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Selective abortion: A choice or a social expectation?

When I was pregnant with my second child I had an amniocentesis—not because I wanted one or knew how I would act on the information—but because I feared people would judge me if my second child was born with disabilities. I feared people would say I'd chosen to have a child with disability, rather than that I'd chosen not to abort. The testing was recommended because my first child had a random genetic condition. "I understand...

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'I love the boy to pieces and I'm grief-stricken'

Here's a sneak peek at part of an interview we're running in the summer issue of BLOOM. It's with acclaimed British director Stephen Unwin. Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, strikes close to home because Stephen’s son Joey, 16 (above left, with sister Bea),...

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'The little things? They aren't little'

I left for work with a pain in my chest yesterday. Ben didn't want to get out of bed. He grunted, signed he was 'mad,' folding his arms in a combative stance, and refused to get dressed. It took a massive amount of cajoling to get him out the door. I felt guilty, knowing I was sending him to a place that causes him great anxiety. Ben had a vocabulary test on the book The Count of Monte Cristo. I envisioned him having a meltdown...

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Pink day

Ben came home today with this cool pink bracelet and ribbon, all part of Day of Pink, an international day against bullying and homophob...

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Join us on Parent Voices!

We have a new group on Facebook for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other. Swing over and join us at Parent Voices. Lou...

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How one boy's life changed mine

By Nick JoachimidesEverybody has defining moments in their life. Mine occurred 17 years ago while I was a high-school student doing a co-op placement on the complex continuing-care unit at Bloorview Children's Hospital. I wanted to try my hand at nursing for a potential career. I was naïve about the number of children with disabilities and it was eye-opening in that sense, that a whole hospital would be dedicated to these...

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Bad Animals: Joel Yanofsky on World Autism Day

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Who will speak for Ethan Saylor?

By Louise Kinross Why are so few journalists, public figures and human-rights and disability groups willing to make a noise about the death of Robert Ethan Saylor, 26, who had Down syndrome, in a movie theatre? On January 12, Saylor ended up face down on the ground in three sets of handcuffs and suffocated because he refused to get out of his seat following a showing of Zero Dark Thirty in Frederick, Maryland....

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Where do families turn for services?

By Sheila Jennings Canadian newspapers are making the public aware of the unmet needs of children with disabilities. According to the Toronto Star's recent Autism Project series: “Our journalists have uncovered an alarming array of policy omissions and holes in social services…” Many of you are following the investigation by Ontario ombudsman André Marin into over 500 parent complaints about the lack of services for adults with...

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